New here... Hi Everyone!

[kevsgal]

So, I've been lurking here for a couple of months, and finally got the nerve to register to contribute. My husband was diagnosed with ALS in May. We live in Chicago, and went to 3 different hospitals for tests, opinions, diagnosis, etc (first Swedish Covenant, then RUSH, then finally Northwestern). We were hoping that someone would find something.... other than ALS. But unfortunately, all 3 with the same diagnosis. We've decided on Northwestern to continue treatment and have already met with the Les Turner foundation for support.

He has significant weakness in his legs (especially the left side) and really struggles with walking. He's exhausted all the time, but he's refusing to use a cane or wheelchiar right now. He has fasiculations pretty much everywhere all the time, which scare the hell out of him. Lately, he's been complaining of shortness of breath and tightness in his chest (even though at his last appointment in June, his breathing test came back perfect). Not sure if it's related to stress, the Rizoule, or a new symptom. Our next appointment at Northwestern isn't until Sept. 17th. so I'm a bit scared. My husband is refusing to go to the ER to find out, despite what the nurse at Northwestern has told him. He's telling himself that it's stress, but I'm not so sure.

We have 2 daughters (17 and 13) and they seem to be handling this ok. We are planning many family vacations over the next year, and have put our house on the market (because it's full of stairs). I think we've covered all the initial items (life insurance, healthi insurance, etc.) but it's been such a whirlwind.

Any and all advice from all of you would be appreciated, as all of this is new to me. I'm not sure what to say, or what to share.... but am hoping to find friends here for support.

Thanks for letting me share.

 

[cheerleader]

To be completely honest- your hubby is probably right in refusing to go to the ER. ER doctors are generally not very knowledgable about ALS- and the fact that it is treated differently from other diseases. Unless it is life threatening, wait till your appointment with the ALS clinic. Donna

 

[Nuts]

Welcome to your new family! It's always painful to welcome new people, because we'd rather you didn't need to be here, but if you've been lurking (as I did for awhile), you already know what a wonderful place this is. Have you read all of the stickies? There is invaluable information in them. Also, was your husband ever in the military? There are additional benefits if he was.

It sounds as if you are being very proactive, which is good. I would encourage him to use assistive devices. It's never too early to order a power chair! It takes awhile to get them in and they are wonderful for conserving energy. Tell him it's a matter of where he wants to expend his energy. He can do it walking and be too tired to enjoy good company or any of his favorite pursuits, or he can use a chair and have the energy to do things that he wants to do. He will also speed up his progression if he overexerts. Ultimately it needs to be his choice, but it sometimes helps to look at things from another perspective.

About the breathing: our clinic lets us come in between visits to have my husband's breathing checked (the first time resulted in him receiving a Trilogy which he uses at night). They say we can come every week if we want to. It wouldn't hurt to give them a call and see if you can take him in if it seems to be a problem

Again, welcome, and please let your husband know that he is welcome here also. Mine doesn't partipate, but I do read posts to him.

Becky

 

[Blondrea]

Welcome. Please feel free to share whatever is in your heart. You are amongst friends.

 

[Nikki J]

Welcome. So sorry you have to be here though!

Not sure about the chest tightness though. Not everything is ALS and suppose it is something else? What about your pcp? They could at least rule out the big things?

Depending on how his leg weakness is afos ( braces ) may be the answer. My main issue is calf weakness and the right afo made a huge difference and especially helps the fatigue.

 

[affected]

Sorry to welcome you kevsgal.

I would go back to your doctor and have the breathing/chest tightness checked. He may be greatly stressed over the diagnosis, it could be something more serious other than ALS. But I agree that the ER is only for emergencies like injuries as they don't understand ALS.

 

[chally]

hey kevsgal, welcome, sorry your here but you are, the good news is your not alone. post often and you will feel stronger. i use leg braces on both legs and that really helps, then at the end of the day i just settle in to my PWC to finish the day out. love &light chally

 

[scaredwifetx]

Hi, I am so sorry to be welcoming you here. I am also very new here as my husband was diagnosed last month but already has weakness in arms, legs, hands and ankles. He is also very resistant to walkers or any kind of walking aide. We had our first clinic on Friday and thank goodness for the family on this forum. You are in good hands and whenever you have any questions, fears or need advice there are a lot of wonderful people on here to help. This forum has kept has kept me sane the past month while preparing me for the steps I need to take. Read the posts and learn whatever you can. It will help you feel more in control and help you to prepare. Know you are not alone and we are all here to help. Network and let anyone and everyone who wants to help, help. This disease will affect your husband's choices and sometimes you will need to take the drivers seat so the more prepared the better.The more decisions that are made together the better you will both handle the challenges. The caregivers role is very important and sometimes overwhelming so accepting help is very important. My thoughts are with everyone on this forum.

 

[Ed340hp]

I recommend meeting with your General Practitioner as well as the clinic people. More sources of help and faster response gives you options.

The first few weeks are the worst mentally for someone who typically never visits Doctors. Everything you feel and do is a shock that the mind tries to convince you is rapid progression. Antianxiety drugs help.

Eventually you read about others that have had the facilitations years. Minor panic attacks come at odd times. Everyone progresses differently, and unfortunately there is nothing you did or anyone can do.

Somedays it takes extreme measures to get the mind off of the diagnosis and all it leads to, and any help to provide that vacation from the future is priceless.

 

[swalker]

So sorry to welcome you here. I found this to be a place of caring, informed, and just all around wonderful people. Please be sure to ask any and all questions!

Steve

 

[Green Queen]

G'day kevsgal.
This site is my favourite Activity of Daily Living. To share among friends who truly get it is just awesome.
God bless, Janelle x

 

[hjlindley]

Welcome to the club no one wants to be a member of. I hope your husband changes his mind on the chair. My equipment guy said the sooner you sit down the longer your legs will work. I've lost too many male friends to head injuries. The wheelchair is freedom, freedom to visit every aisle in Home Depot, the freedom to browse any store. Feel free to ask us anything. I've been fighting with his devil for eight years. I can still talk, breathe, and eat. Will help you anyway we can.

 

[lgelb]

Welcome, KG. My first advice since you are moving at some point is to consider sidewalks, overhangs, curbs, garages and transit very carefully when you make your move, since ice, snow, wheelchair vans and powerchairs are not easy to mix and match. Nor is wind fun for PALS. You will get better advice from those here still in colder climes, but just something to think about as you scout around.

Best,
Laurie

 

[patrick123]

Welcome to the family.

 

[texastracy]

Welcome to the group!